Anthony Dominguez

Anthony Dominguez, 19, Chiari Malformation

How would you explain Chiari Malformation to a child?

Chiari Malformation is a condition in which the brain tissue extends into the spinal canal. It happens when the skull is too small. It’s not something that everyone knows about. It gives extremely terrible migraines. I learned more about it in support groups. Anthony also has hydronephrosis, which is a kidney issue where there’s excess fluid that damages the kidney due to the urine backup.

What would you want the world to know about Chiari Malformation?

I’d like the world to know about these indifferences. Anthony was lucky his 2 surgeries for the brain just about fixed his issues. He still gets mild headaches here and there, but he’s on meds to prevent that from happening that he takes every single day. And his kidney issue will never get resolved. He’s working on the reserves of his kidneys. That’s how damaged they are.

What does it feel like to live with Chiari Malformation? 

As a parent, I am constantly making sure he drinks enough water and takes his meds. To avoid headaches and damaging the kidneys, he can’t have certain foods like red meat or too much caffeine because the kidneys can’t handle it. Yet caffeine helps with his headaches.

What brings you joy?

It brings me joy that no matter his condition or issue, he always smiles and is very outgoing and friendly. Never in 19 years has he ever acted to have a problem! I’m grateful he’s as strong as he is. Everyone who knows him loves him. There isn’t a place where we go where he doesn’t know someone, and I don’t get complimented on his well-behaved manners.